News

Success Stories Wanted from Members.

Please submit your success stories or ways that the Brockville M.E. Assoc. has helped you in the past or is currently helping you.This may include information received from Guest Speakers; information received from other members; the library or the booths on May 12th.Deadline is October 28th. You can send them in by e mail, regular mail or bring them to the meeting on October 27th., send them to the attention of the President Mary Fairbairn. We need a story to submit to the United Way by early November. The others will be used in our 20th. year celebration in 2012.

Thank you, you are helping others by sharing your experiences.

Research

Sign this petition to:

retract the PACE trial's claims that exercise and CBT lead to recovery

demand researchers release their data for independent review

What does the PACE trial claim?

The PACE trial is a British study that claims that many chronic fatigue syndrome patients recover with gradually increased exercise (GET) and a form of psychotherapy called cognitive behavioral therapy (CBT).

Why is this a problem?

The science doesn’t hold up.

What are scientists saying about the PACE trial?

Top researchers in the US and UK have found the study to be “fraught with indefensible methodological problems.” University College London Emeritus Professor Jonathan Edwards found it “a mass of un-interpretability.” Bruce Levin, a Columbia University epidemiologist, called the study “the height of clinical trial amateurism.” Arthur Reingold, an epidemiologist at the University of California, stated that an independent review of the study was “very much in order.” Stanford geneticist Ron Davis questioned how it even got through peer review, given its deep methodological flaws.

What are the issues with the PACE trial?

In short: there are major questions about the way that patients were selected to participate in the study and the methods used to measure recovery.

The claims of recovery are based on criteria that were revised after the study was already underway. Thesenew criteria included “normal ranges” for fatigue and physical function that are so broad that patients could at the end of the trial have physical function similar to someone with congestive heart failure — and yet be classed as “recovered”.

In reality, patients in the graded exercise group walked fewer meters in six minutes than patients with pacemakers, patients with class II heart failure, and cystic fibrosis patients.

2.5 years after the PACE trial, a study found no difference in outcomes between patients treated with CBT or GET and those in the other treatment groups (so-called “specialist care” and “adaptive pacing”)

The architects of the trial have refused to release their data for independent review, even in light of the study’s methodological issues

In addition, patients were selected using an overly broad criteria called the Oxford Criteria that can include patients with primary depression and other diagnoses in addition to those with ME.

Why is the PACE trial so important?

The PACE trial has had a profound effect on how patients are treated in the media, in medical practice and by society. It is the basis of medical treatment guidelines for ME around the world. PACE indirectly supports negative stereotypes, promotes the invisibility of severely ill patients (some of whom cannot even sit up in bed, let alone "exercise") and the abuses of forced institutionalization. It delays, distracts, and detracts from the promise of biomedical research. It directly contributes to untrained doctors recommending interventions to patients that may actually make them worse. Most ME and CFS patients walking into any primary care office in the world would, given the guidelines for their diagnosis, be advised to exercise.

What do the authors say about patients' criticism and demands for transparency?

Investigative journalist David Tuller reported that when a patient requested data last year on how the patients deemed ‘recovered’ by the investigators in the 2013 Psychological Medicine paper on PACE had performed on the six-minute walking test, Queen Mary University of London initially rejected the request as “vexatious.”

When asked at the press conference on Tuesday, co-author Michael Sharpe said that he didn’t think there was “a growing army of people upset about this” and that he did not understand “what motivates the very vocal minority that gets so upset about this apparently benign bit of moderately helpful treatment.”

Help us show that we are not simply a vocal minority, but a global majority that wants to be heard.

"People with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), are not able to donate blood until they have fully recovered.

The reasons for this are: first blood donors need to be in good health, and people with ME/CFS often experience a range of symptoms which could be made worse by donating blood; and second, as the cause of ME/CFS are not currently fully understood, people with the condition are deferred from donating blood as a precautionary measure ri protect the safety of the blood supply for patients"

Newsletters

The BMEA's monthly newsletter is offered for free throughout the community - although donations to help produce the newsletter are always welcome. We hope you enjoy reading it!

ME/CFS Centre

The ME/CFS Centre Online Group and Mailing List is a resource and support centre, located in Second Life, for people with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. All people with ME/CFS along with their friends and family are welcome to use the virtual Centre to meet other people, browse our resources, or hold gatherings.

If you suffer from ME/CFS and would like to participate in an online study please email Tania Aguila-Way at
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
.

In The News

The Globe and Mail of Friday Oct. 9, 2009 presents an article entitled Virus found in Cancer linked tochronic fatigue written by David Morgan. It has been reported that a virus linked to prostate cancer and known as XMRV, was found in the bloodof 68 out of 101 chronic fatigue syndrome patients as compared with only 8 of 218 healthy people.“Judy Mikovits of the Whittemore Pearson Institute in Nevada and colleagues at the U.S. National Cancer Insti-tute and the Cleveland Clinic emphasized that the finding only shows a link between the virus and chronic fatiguesyndrome, or CFS, and does not prove that the pathogen causes the disorder.Much more study would be necessary to show a direct link, but Dr. Mikovits said the study offers hope that CFSsufferers might gain relief from a cocktail of drugs designed to fight AIDS, cancer and inflammation.” XMRV or xenotropic murine leukemia virus-related virus is a retrovirus , like the HIV virus that causesAIDS. XMRV has also been found in some prostate tumours and is also known to cause leukemia and tumoursin animals. “Dr. Mikovits’ team said further research must now determine whether XMRV directly causes CFS, isjust a passenger virus in the suppressed immune systems of sufferers or a pathogen that acts in concert with otherviruses that have been implicated in the disorder by previous research.” Not only does this article link CFS to a number of extremely serious and debilitating illnesses but it pro-vides an accurate list of symptoms as provided by the U.S. Centers for Disease Control andPrevention. What it means for us, is one more very compelling reason for taking our illness seriously.